Time Stops For No Man

A not-so-friendly reminder for anyone who lives with a chronic condition or a continuous hardship that often keeps them holed away inside: The world keeps spinning, the clock keeps ticking and the years keep flying by.

This thought makes a continuous loop in my mind, driving me almost mad. Have you been driven mad by it before also? If you’re thinking to yourself “no I haven’t,” then please share with me your secret.

I’m in a period of my life where I’ve been handed multiple bad hands all around the same time. Do I think I’m the only one in this position? Of course not. Am I grateful that my situation is not worse? Always. But do I still lose myself to an overpowering feeling of frustration and helplessness sometimes? If I said no, then I’d be lying to all of you as well as myself.

Today I woke up with a headache that I knew was going to stick around for the rest of my Saturday. As my body and mind awakened, I couldn’t help but think”here we go again”–A thought I’m usually very capable of pushing away, making room for much more encouraging and positive thoughts to fuel my day. But I’m only human and we all have our moments.

A day of pre-planned activities, of seeing family, of changing out of my sweats and leaving the house, all slipped from my fingers before I even had a chance to attempt to keep my grip on it. My bed was my companion today and my thoughts were that friend in the group who always shows up unwelcome and then sticks around until you show them the door.

Most of the time, I give myself an hour or two before I kick myself into gear and start acting like my normal self again. But there was one thing my brain just couldn’t let go of today: The idea that I have wasted (and will continue to waste, as it’s looking right now) so much of my little time here doing nothing fun, nothing of significance and nothing that will make memories, due to my headaches tying my hands and my feet to my bedposts. I’ve spent so many mornings, afternoons and evenings wondering what other people are up to while the next episode of Friends automatically starts playing on my laptop. It leaves me feeling so full of resentment. It leaves me feeling like I have to play such a large game of catch up with the rest of my family and friends the next time I’m feeling up to getting out of bed.

If you’re reading this and rolling your eyes thinking “Girl, lose the drama because you have it nowhere near as bad as other people” Then please, keep thinking it, because you’re absolutely right. I still have a functioning body, an intelligent (boastful, much?) mind, and all of life’s necessities at my fingertips. I don’t live in the hospital, I merely just make my friendly visits there. I take medicines to help me get along, but I would be able to survive without them. My life is wonderful in comparison to thousands of others. I’m incredibly lucky to be able to do so many every day activities on a pretty routine basis. So I apologize in advance if my venting offends anyone. My problems are so minute and I resent myself for thinking those thoughts of resentment and for sometimes adopting that “woe is me” mindset. It’s a terrible cycle to jump into. Grab a hold of the rails before you accidentally fall into it as well.

I don’t enjoy sharing these thoughts with others, mainly due to the fact that I don’t want to seem ungrateful for what I’ve been blessed with in my life. But, why have this blog if I can’t write about what I am honestly experiencing, feeling and thinking? My purpose of starting this all was to reach others who might possibly be feeling something similar to what I am feeling. I’m sure other spoonies out there, and even other people who may be facing something in their lives that are keeping them from doing everyday things they hope they could be doing, know this feeling of losing time to something that so often takes control of their lives.

I didn’t mean for this post to be a buzzkill, per se. It’s one of those days, though, where writing has been the only outlet that has helped start to set my mind right again.

I wish I could practice what I preach more often and focus on the positive things every day of my life, but as many things are, it’s much easier said than done.

A goal of mine now, after having spent the day angry about the lost time in my life, is to spend every waking moment that I feel healthy enough to be doing something other than lying in my bed, doing something new, exciting, adventurous, fulfilling, thoughtful, and memorable.

There’s no real way to know what tomorrow will bring. But I do know that I’m going to take full advantage of every moment that I can. I don’t want to be afraid to hear the ever-present clicking sound of the minute hand ticking away on that clock on the wall.

 

Song of the Week: “Pursuit of Happiness” Covered by Lissie

I’m on the pursuit of happiness and
I know everything that shines ain’t always gonna be gold
I’ll be fine, I’ll be good

Although I’m a Kid Cudi fan for the most part, I really like Lissie’s  version of this song. Her covers are always pretty awesome.

What gets me most in this song are just the vibes that it sends out. The “I’ll be ok. What will be, will be” kind of vibes.

It’s about living your life to the fullest without worries of what others think and also without worries of what may happen to you the next day, month, year, etc. Now, everything in moderation people. Not saying to go cliff jumping or to go do something illegal and dangerous. Just saying that we can’t live our lives worrying about what may happen next. What we need to do is live in the current moment. To seriously live with a live free type of mentality.

That saying “life isn’t fair” is one of the truest things I’ve ever heard. But even though things won’t always go our way and often life will throw things our way that are less than ideal, we have to get up and embrace life. When life gets rough, we shouldn’t “lay awake in our beds full of sorrow.” We should get ready to face tomorrow.

Things in this life won’t always shine with gold, but we’ll be good once we learn to stop letting those bad things put our life on hold.

The Most Typical of Mondays

Yesterday was a test of my patience, perseverance, and temper. What started out as a classic “Monday Mishap” escalated into a “Monday Mayhem.”

I experienced those typical “ugh” moments that everyone faces pretty often-losing your wallet (temporarily, thankfully), dumb drivers on the road, timing mishaps and office troubles–but there was one segment of my day that just really set me over the edge.

While I’ve been making some progress with my headaches and narcolepsy situation, I’ve only seemed to take numerous steps backward in my journey with food allergies.

After ending up in the ER two weekends in a row, I’ve been eating really “safe” foods because it’s nerve-wracking to eat when you aren’t 100% sure what your food allergies are. So yeah, the anxiety is continually on the rise. So I did what any normal person would do (after a year…whoops.) I made a follow-up appointment with an allergist–optimistic that the doctor would be able to ease some of my anxiety, answer some of my questions, and bring even a tiny bit of peace to my mind. Yet, I got just the opposite.

I’ve seen my fair share of doctors and I’ve seen a few who I didn’t exactly see eye to eye with regarding treatment plans. However, I’ve never seen a doctor who made me feel so belittled, frustrated and generally pissed off before. He looked at me like I had ten heads when I asked him questions and told him things other doctors have told me. For reference, I’m very new to the food allergy world. It’s not like I’ve had a peanut allergy my entire life and know how to manage it–no I recently developed a seafood allergy–which he thinks is not even possible (what?) He spewed his BS at me, shook his head like I had told him I got my information from “The Onion” rather than from accredited doctors, and sent me on my way to get a blood test for only crab and salmon (to my knowledge, there is other seafood out there, but what do I know right?) Times like these I wish I had been ballsy enough to tell him his word meant nothing to me and walked out, but I politely left the office and went to go get stuck by another needle. (although the guy who took my blood was awesome, so super grateful for that. I’ve never had such a painless experience getting blood drawn. props to him.)

I understand that there are times when people have bad experiences with doctor visits. However, for spoonies such as myself who see doctors more often than they see most of their friends, it’s extremely frustrating. It wasn’t so much that I was sad, I was just genuinely pissed off at this guy. It was a waste of my time–and spoonies also know how valuable time spent in a doctors office is when we’re trying to find answers.

I sat in my car afterward cursing the doctor wishing I had told himself to stick his handshake where the sun don’t shine, until my dad kind of set my mind right. He made me realize that there’s really nothing to cry about. I’m allowed to be pissed off, but I have to be able roll with the punches. I have to be able to take the annoyances and learn from them. I have to try to find even the tiniest positive thing from the experience and move on to what’s next.

We’ll all have days that make us want to break things and scream to the skies yelling “Why me? What did I do in a past life to deserve this shit?” But at the end of the day, we can’t change what just happened. We have no control over what and how much gets thrown in our path. We do, however, have control over how we handle those days. We can throw in the towel and walk away cursing under our breaths. We can rage until someone fixes their wrongdoings brought upon us. Or, we can take a deep breath, calm ourselves down, figure out the next step and move forward. We can gather our patience, grab a hold our temper, and persevere on.

It’s not the destruction that’s tearing you down that will define who you are or where you go in this life. It’s how well you step over the rubble and walk through the fire.

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Chronically Grateful Day 12: What Is A Fear You’ve Conquered Despite Your Chronic Condition?


Having to always cancel plans, be left out of activities, know that you can’t do some of the things most people can, and always having to explain yourself, it’s easy to become worried about what others think of you. I wonder what they think when I try to explain why I can’t go on the hiking trip with everyone (for example) because my head will start hurting just five minutes in and the rest of the time will be like a living migraine filled nightmare for me. I used to fear people would think I was just making excuses or something. I’d fear that they would judge me for what I couldn’t do, and not for what I can do: which is fight a debilitating battle against head pain. There have been multiple instances where people don’t understand the severity of it and will say something like “oh come on! Don’t be a baby!” In which case I try my best not to get upset and defensive, knowing some people wouldn’t last an hour with a migraine while hiking 7 miles up and down a mountain (and from experience I know it feels like you would rather pluck your head off than continue hiking)

I’ve gotten over that fear though, because I know I don’t need to explain myself to everyone. The people who are close to me understand and don’t need an explanation anymore. The people who are close to us won’t demand an explanation. I also know that everyone has their own battles. Why should I judge them when I don’t know what they’re possibly going through? The saying “you can’t really understand a persons experience until you’ve walked a mile in their shoes” couldn’t be more true.

If you get over the fear of what people think of you, you will do so much more in your life and feel so much more comfortable and confident 🙌🏼✌🏼️

Zero To Hero

  
At some point in life, we will be broken. It’s inevitably a part of living. The hope is that we can rebuild and become strong at those broken places. Ernest Hemingway was a powerful writer and I find myself connecting to so many of his words. 

People with chronic pain or illnesses have a higher chance of being broken more than once, I think. There’s so much physical, mental and emotional struggle that comes along with the chronic pain we face. It’s a packaged deal and we don’t have the option to pick and choose which we go up against. 

For the past two months or so, my headaches have been relentless. Forcing me to force smiles and laughter. Making me work twice as hard as I normally would to do everyday tasks and things I need to do to get by. I’ve had some sincerely joyous, carefree moments within these two strenuous months. I do manage to have fun and truly laugh beside friends and family even during the worst of it. But when I take a step to the side and have a sidebar of my own, I have felt myself breaking to the point where I know that I’ve been broken by this life. My headaches have pushed tears through my eyes and created a nonstop state of frustration. It’s as if I’ve hit a wall because I have all these different directions I can go to try to figure out a “cure” or a diagnosis. But it’s hard to try to figure out which is the best road to go down first. 

I want to be one of the “some” that Hemingway talks about in this quote though. A part of the some that walk away stronger at my broken places. I’m determined, really, to be a part of that “some.” So I truck on, keep seeing different doctors, taking different tests and trying a wide range of tricks to try to help bring my headaches down even just a tiny notch. 

So if you’re feeling broken, just know you’re not alone. Know that you’re not a victim, because it happens to everyone. But also remember that you can take that feeling and build upon it. You can either let it continue to drag you down leaving you in pieces for someone else to try to put together, or you can become strong at those broken places and know that it will only turn you into a stronger fighter and more compassionate and empathetic person. 

Once In A Lifetime People

  
I consider myself so lucky to have these kind of people in my life. I’ve been blessed with people who stand by my side and support me in everything I’ve been going through. They don’t falter or leave me alone. 

These people help me find silver linings when the clouds seem too grey. They keep my faithful and help me stay proactive in my search for answers. 

These people love me for me: chronic pain and all. They love me even though I much too often have to cancel plans with them because I don’t feel well. They stay in with me when everyone else is out having a good time. These people love me even though sometimes I get sad, frustrated and angry because of my health problems. 

I hope that you all have found your once in a lifetime people as I have. And when you’ve found them, don’t let them go. 

Patience Is A Virtue

Sometimes things aren’t clear right away. That’s where you need to be patient and persevere and see where things lead.

-Mary Pierce

One of the biggest things I struggle with in life is patience. Friends and family of mine are sure to agree with that. I try my best to work on it, but we all have our flaws and impatience is one of mine. 

Being impatient brings no good into your life, though. It only makes way for worry and anxiety (Both of which I’m a frequent victim of.)  

Living with chronic pain makes it harder for me to be patient. I don’t want to wait for answers. I don’t want to wait for relief. I don’t want to wait to see if the next day I’ll feel well enough to get off the couch. But that’s all we really can do, isn’t it? Wait. So we can either wait with patience, and try to get peace of mind or we can wait impatiently, only adding unnecessary stress to our stressful lives. 

This quote I put up above speaks to me because we can never be clear why something is happening in our lives. We don’t know why we are put through the struggles thrown our way, but instead of worrying about finding the answers we need to find patience and perseverance to see where we will end up after the storm ends. 

So each and every day I tell myself to practice patience. We will end up where we are meant to be, we just have to have faith and be patient until that time comes. 
what do you do in order to remain patient when you aren’t seeing results from suggested medicines, methods or suggestions provided by doctors?


Beautiful People Don’t Just Happen

  
I came across this quote recently and thought it was one of the most insightful and true things I’ve read recently. 

People have their own definitions of beauty, but I know that beautiful people don’t just happen. While some people say beautiful people can be described as someone with God given good looks, I say beautiful people are ones that have gone through struggle and experienced loss but have risen from the darkness of it. 

Everyone has their mountain to climb or obstacle to overcome. We can’t always see on the outside what someone may be going through. Some choose to hide their suffering and defeat, while others it’s a visible struggle. But no matter what, when people are able to overcome their defeat, they are molded into the beautiful people they were meant to be. They understand compassion more easily and are able to fully understand life in all its ups and downs.

Beautiful people do not just happen. Everyone has fought a battle of some sort. So if you stop to take a look around you, you’ll see that beautiful people are really everywhere. 

Cheers To A Hopefully Relaxing Weekend 

  
Weekends bring about relaxation, much needed rest and also plans, activities and much needed energy to be a part of those plans. Sometimes we catch a break and feel good for the weekend. We’re excited about seeing our friends or families and getting to maybe be outside for a few hours. But other times, our pain decides how we’ll feel. Lethargic, frustrated and not feeling up to doing anything.

When that happens for me, I get sad because I know I’ll be missing out on whatever my friends have planned. It’s hard to face that sometimes we just can’t do what we planned or what we wanted, and it’s even harder trying to explain that to our friends sometimes. But while our pain continues, the world keeps spinning. Plans continue, friends still gather and our FOMO (yep I get fear of missing out like nobody’s business) kicks in.

Lately, I just have to remind myself that life is unpredictable and we have to take it as it comes. I try not to be so upset when my headaches make me miss out on weekend plans. And I feel truly blessed and really cherish the weekends where I am able to go out and do fun things.

So hopefully we can keep the “mind over matter” thoughts in our heads as we head into another beautiful weekend in this beautiful life. And that we take advantage of every chance we get to enjoy a beautiful weekend like this one.